Elevated parathyroid hormone (PTH)

Posted by ladybugmg @ladybugmg, Sep 27, 2018

After I had a nonfasting blood test yesterday my doctor tells me that I have elevated PTH. Is anyone else dealing with PTH and if so would appreciate learning about their experience and how it was treated or is untreatable. Thank you for sharing.

Liked by TERESA LOGAN

@mayojulia

Hi dear volunteer mentor : I’m a physician rheumatologist from Miami Florida diagnosed with hyperparathyroidism, I’m looking for a surgeon with the most experience in this surgery . Could you provide me with the information as to how many parathyroidectomies have each doctor: Dr Dy, dr Leyden and Dr McKenzie performed? I would really appreciate that information. Thanking you very much in advance. Julia.

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@mayojulia

I can understand you are wanting to know all about a surgeon, however, I do not have that kind of information.

I would suggest that you call Mayo Clinic in Minnesota and ask that question.

Will you post again and let me know how you are doing in your search for a surgeon?

Liked by alamogal635

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I have had high PTH and normal Calcium with many, many symptoms and have also been extremely frustrated. I have a referral to Mayo in Rochester and am trying to sort out how to get there and have more testing done. I initially had a PTH level drawn to investigate my symptoms of headache, fatigue, palpitations, etc. and My Calcium was 9.6 with a PTH of 85. My next draw was super odd with a Calcium of 8.8 (not corrrected for Albumin) and a PTH of 109. Then it was all checked again and I had a Vitamin D level of 23. After supplementation it was 29 with a Caclium of 9.5 and a PTH of 76, and then Vitamin D 40, with Calcium 9.4, PTH 76. The Endocrinologist that I have been seeing says that my PTH is now "normal" and that I had secondary HPT, but shouldn't the PTH be much, much lower? My PTH has been tested 5 times and never below 75, but my calcium has never been higher than 9.6. Hoping I can get to Mayo for eval., but I am scared to spend the time and money only to be turned away again! Thanks to everyone for sharing your experiences. It would be nice to hear from more "normal" calcemic patients!

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@megansims

I have had high PTH and normal Calcium with many, many symptoms and have also been extremely frustrated. I have a referral to Mayo in Rochester and am trying to sort out how to get there and have more testing done. I initially had a PTH level drawn to investigate my symptoms of headache, fatigue, palpitations, etc. and My Calcium was 9.6 with a PTH of 85. My next draw was super odd with a Calcium of 8.8 (not corrrected for Albumin) and a PTH of 109. Then it was all checked again and I had a Vitamin D level of 23. After supplementation it was 29 with a Caclium of 9.5 and a PTH of 76, and then Vitamin D 40, with Calcium 9.4, PTH 76. The Endocrinologist that I have been seeing says that my PTH is now "normal" and that I had secondary HPT, but shouldn't the PTH be much, much lower? My PTH has been tested 5 times and never below 75, but my calcium has never been higher than 9.6. Hoping I can get to Mayo for eval., but I am scared to spend the time and money only to be turned away again! Thanks to everyone for sharing your experiences. It would be nice to hear from more "normal" calcemic patients!

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Hello @megansims

I can understand your confusion. My PTH levels and calcium levels have also been up and down. My endocrinologist is on the staff at a large university medical center and she is quite good. She has diagnosed me with hyperparathyroidism even though the levels are inconsistent. I would encourage you to visit Mayo or another research-oriented, multi-disciplinary health center where you can be evaluated.

Do you have any other health problems of significance? Please share only as you are comfortable doing so.

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@sennertd

High PTH is caused by your parathyroid gland releasing too much PTH. PTH and calcium work together to keep each other in balance. If the PTH is high, the calcium should be very low. Or vice versa. If both are high or even at the high normal, you need to get it checked out. You should get the both the PTH and calcium tested in the same blood draw. Sometimes if the Vit D is low, it will cause the calcium to be high. My calcium ranged from 9.9 – 11.2 over 5 years before I was diagnosed with Hyperparathyroidism. They didn't check my PTH until my calcium was finally flagged as high. The only "cure" for this is to have the parathyroid gland removed that has the adenoma (tumor) on it. You need a surgeon who performs at least 50 of these a year as it is highly specialized. There are many symptoms of Hyperparathyroidism but most can be blamed on something else. I had about half of them. I went to Mayo in Rochester for final diagnosis, surgery consult and surgery. I was VERY happy with the drs and treatment. They ran all the necessary tests within 24 hours that confirmed the diagnosis. They range from blood tests, 24 hour urine, bone density scan and a nuclear scan. It was an outpatient surgery. I was in the hospital for 6 hours total. They removed one adenoma. They use interoperative PTH testing and that is how they know that the correct parathyroid gland was removed. A person has 4 glands and they can all be affected. They have to leave 1/2 of one. In my case, my PTH dropped from 77 to 15 so they knew the one gland that showed up on the nuclear scan was the only one. I started to feel better immediately, my symptoms all went away within a week. I was lucky because I had very limited bone density loss and when I get it rechecked, they feel it will be normal again. I also did not have any kidney stones which are very common with this disease. Good luck.

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I am getting frustrated with my doctor, have had slighly high calcium levels for years off and on, finally checked pth and it is high and has been for awhile, looked at one other time it was checked back in 2005, yep 2005 and it was high then but ignored. Doctor now checked bone density in knees and says it good but D3 is low so now i will be taking 50000 units once a week and 2000 units once a day for 3 months. My calcium is 10 right now, down from 11.3 so he says that is normal so no problem. Yep I feel awful and have been having erratic high blood pressure that doesn't respond to meds for very long….oh when he did a scan in his office like ones they do on pg ladies it showed thyroid or parathyroid nodules….

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@dianechapman

I am getting frustrated with my doctor, have had slighly high calcium levels for years off and on, finally checked pth and it is high and has been for awhile, looked at one other time it was checked back in 2005, yep 2005 and it was high then but ignored. Doctor now checked bone density in knees and says it good but D3 is low so now i will be taking 50000 units once a week and 2000 units once a day for 3 months. My calcium is 10 right now, down from 11.3 so he says that is normal so no problem. Yep I feel awful and have been having erratic high blood pressure that doesn't respond to meds for very long….oh when he did a scan in his office like ones they do on pg ladies it showed thyroid or parathyroid nodules….

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@dianechapman My elderly mom had similar numbers for blood calcium scores and parathyroid problem caused by a tumor that went on for a few years. She had surgery and a blood test during surgery to confirm they were removing the correct one of the 4 parathyroid glands in her case. Her calcium levels returned to normal after that, but it caused thinning of her bones and a week after the surgery, she fell and broke her pelvis, her foot and her ankle, and spent 3 months in a rehab facility. You might want to get another opinion with a specialist in parathyroid issues. Another thing about calcium supplements according to my doctor is that it should be balanced with vitamin K2. I take K2D3 from Orthomolecular. You can also get K2 in your diet, but it is needed so you don't deposit the calcium in your blood vessels.

Here are some links that may be of interest regarding this type of parathyroid surgery and hypercalcemia (high blood calcium)
https://www.mayoclinic.org/medical-professionals/endocrinology/news/a-missed-parathyroid-adenoma-a-case-from-the-endocrine-teaching-clinics/mcc-20422649
https://www.mayoclinic.org/medical-professionals/endocrinology/news/role-of-focused-parathyroidectomy/mac-20431037
https://www.mayoclinic.org/departments-centers/endocrine-surgery/sections/tests-procedures/orc-20472056
Thyroid nodules can be benign, but should be checked out. I have multiple nodules with Hashimoto's Thyroiditis. I have had a needle biopsy of my thyroid to rule out cancer, and my nodules have reduced in size over a few years. I had all my silver dental amalgam fillings removed which according to my doctor were leaching mercury and impacting my thyroid, and after removal, the blood tests that measure the level of antibodies that I have against my thyroid dropped dramatically. I also take Naturethroid which is desiccated pig thyroid hormones which have all the components the body needs. Some patients cannot convert the components in the synthetic thyroid medicines such as Levothyroxin.
https://newsnetwork.mayoclinic.org/discussion/what-is-hashimotos-disease/
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

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@jenniferhunter

@dianechapman My elderly mom had similar numbers for blood calcium scores and parathyroid problem caused by a tumor that went on for a few years. She had surgery and a blood test during surgery to confirm they were removing the correct one of the 4 parathyroid glands in her case. Her calcium levels returned to normal after that, but it caused thinning of her bones and a week after the surgery, she fell and broke her pelvis, her foot and her ankle, and spent 3 months in a rehab facility. You might want to get another opinion with a specialist in parathyroid issues. Another thing about calcium supplements according to my doctor is that it should be balanced with vitamin K2. I take K2D3 from Orthomolecular. You can also get K2 in your diet, but it is needed so you don't deposit the calcium in your blood vessels.

Here are some links that may be of interest regarding this type of parathyroid surgery and hypercalcemia (high blood calcium)
https://www.mayoclinic.org/medical-professionals/endocrinology/news/a-missed-parathyroid-adenoma-a-case-from-the-endocrine-teaching-clinics/mcc-20422649
https://www.mayoclinic.org/medical-professionals/endocrinology/news/role-of-focused-parathyroidectomy/mac-20431037
https://www.mayoclinic.org/departments-centers/endocrine-surgery/sections/tests-procedures/orc-20472056
Thyroid nodules can be benign, but should be checked out. I have multiple nodules with Hashimoto's Thyroiditis. I have had a needle biopsy of my thyroid to rule out cancer, and my nodules have reduced in size over a few years. I had all my silver dental amalgam fillings removed which according to my doctor were leaching mercury and impacting my thyroid, and after removal, the blood tests that measure the level of antibodies that I have against my thyroid dropped dramatically. I also take Naturethroid which is desiccated pig thyroid hormones which have all the components the body needs. Some patients cannot convert the components in the synthetic thyroid medicines such as Levothyroxin.
https://newsnetwork.mayoclinic.org/discussion/what-is-hashimotos-disease/
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

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my calcium was 11.3 and pth was 79 in oct but now it was calcium 10 and pth 82…he did order some scan that will be done in couple of weeks, not sure what it is but do know they will inject soemthing in morning and then have to go back for a scan in the afternoon, thank yu for the links i will read them, I am a week short of my 68th birthday and have spent the last 3 years feeling terrible and fighting a up and down blood pressure, tried lots of meds that made things worse…not a fun couple of years for sure

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A great site I found very informative is.
parathyroid.com

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